IceLizard

Yes, I would worry. Those readings are close to hypertensive crisis levels. Please see a doctor about this soon. If your levels stay that high and don't come down or go higher it could be an emergency that requires treatment right away. http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/expert-answers/hypertensive-crisis/faq-20058491

Hi everyone, I am having trouble with a new symptom and wonder if it could be part of dysautonomia. I had to drink Moviprep for a colonscopy last week and it caused me to feel very cold and have chills even in a hot room. I had to abort the procedure due to my reaction to it. The problem is that it has been over a week and they have not completely gone away. I have no abnormal pain or fever, just chills that travel throughout my body and the feeling of being very cold. Maybe the Moviprep was a trigger for a bodily reaction? I am not sure but I will ask my doctor tomorrow. Anyone else have anything like this?

Hello MakeMeErised, I have some experience in this area as I have had hundreds of episodes of passing out followed my what looks like seizures (I've had this problem for about 10 years). As another commenter said, what has been happening to me is probably convulsive syncope. I had this confirmed on a tilt table test: my heart rate went up to about 150, then my blood pressure dropped to 30 systolic. I loss consciousness and then had convulsions. The convulsions are thought to be a reaction to the lack of circulation to the brain. I know low blood pressure can cause this, but I know less about critically high blood pressure. Sometimes I get high blood pressure after I have episodes of low blood pressure, like my body is over compensating. Bad episodes are very scary and it can feel like I am dying. Sorry you have had this happen to you, too. I know that stairs are a trigger (even listed on the dinet page "what to avoid") and I never go up them if I can avoid it. Last time I had to go up stairs (elevator was out), I took it very slow with frequent rests and monitored my heart rate with a pulse oximeter the entire way. Felt like it took me 20 minutes to go up those **** stairs! But, I did not have an attack, so I guess it was a success. Sometimes going up by sitting and pushing yourself up backwards is easier. I also have to be very careful not to over-exercise because that is a trigger as well. I am currently looking into mast cell disorder because episodes of high blood pressure and POTS are sometimes linked to improper mast cell activation (http://hyper.ahajournals.org/content/45/3/385.full). I hope to be tested next month. I'll let you all know what happens. Best wishes!

Thank you for keeping us posted. Hope you find some answers with him soon!

Yes, it is a variant of POTS. It is called orthostatic hypertension and I have this sometimes as well. I have found a good article on it: http://www.medscape.com/viewarticle/543590_2 Best wishes!

@Raisin I do not know if I have hypovolemia, but I am on Florinef and do not do well off of it. Taking more Florinef does not help with the tremors/ataxia, Benzodiazapines do help. I hope you can find some answers! @looneymom You're welcome and I hope Tyler gets to feeling better.

My tremors sometimes escalate into convulsions and I am on 5 mg of Librium (a long-acting Benzodiazapine which also works on GABA) which does help quite a bit, but I don't want to be on it long-term. I am wondering if I also have a GABA issue because of the way I reacted to Gabapentin. I was put on it for migraines, but it made me so sleepy that I tried to come off of it. That caused intention and orthostatic tremors which quickly became convulsions that would NOT stop. I was put into the hospital and given IV Ativan to calm the convulsions. I think I may try weaning off the Librium when the time comes with GABA... Informative Article: A Biochemist's Experience with GABA: http://www.phyllisbronsonphd.com/Graphics/BronsonGABA.pdf Thank you looneymom for your information on GABA

Sorry I can't give you answers but I have ataxia, too. Sometimes it occurs after I have been walking too long and sometimes it occurs when I am feeling "POTSy" and then try to get up and walk. Sometimes it is so bad that I fall down or have to sit down because my legs won't work. I also have intention tremor.

Hi, you may be having a vasovagal response, where the heart rate slows down temporarily in response to a stressor. This wikipedia article is very informative: http://en.wikipedia.org/wiki/Vasovagal_response

@ Katybug. I also have a fluttering in my ear, but only in response to certain sounds. It has a name: Tonic Tensor Tympani Syndrome.

I was in the hospital the yesterday with uncontrollable shakes that got worse when I stood or tried to move. I could not walk or use my hands because of them. I am also on Paxil and I though maybe my tremors were worse on it, so I tried to stop. That led to shaking and spasms that lasted an entire day. They gave me Librium, (related to Valium) and it has stopped the shaking, but now I am concerned about being on a Benzodiazapine. What will happen when I try to stop that? Sigh....

Hello. Have you been having problems with adjustments? I know in the past having adjustments on my neck made me very dizzy and increased my pain, so I stopped. It sounds like though you have been feeling a little better with adjustments... Hmm... You might try going over to the Chiari boards (Ben's Friends) and asking people who already have it what they think. In the meantime, try to do something to calm down if you can. Anxiety can make symptoms worse. Best wishes.

Hi Gemma, The website has a list of doctors on the medical advisory board and they are all mast cell specialists. The link "medical research centers" also lists places that deal with mast cell diseases. Another doctor people have mentioned is Dr. Anne Maitland. I had a disappointing visit with my GP today. I talked about trying to find the cause of the dysautonomia and he basically said "There is no cause, it just is an abnormal response." Not kidding. Then we talked about mast cell involvement and he said it was useless to investigate further because the treatment is just over the counter Zyrtec (as you know there is more to it than that). I am not sure what to do next, because I need a referral to a doctor who knows about the connection between dysautonomia, connective tissue disorders, and mast cell activation, but my doctor is not really taking it seriously. I don't know what to do but I know I don't want to be disabled all my life!

Hi Gemma, I have found a list of doctors that specialize in treating these disorders. http://tmsforacure.org/physicians/mab_1.php I am not sure whether I have it or not yet, so I am going to talk with my primary care doc before I see a specialist. I want to minimize the chances of travelling to see a specialist only to find that that's not the problem. While I am waiting I thought I would see whether Zyrtec and Zantac would help. I think it is really helping the brain fog and fatigue, but I may need to do an experiment where I go off of them and see what happens just to be sure. I starting thinking about mast cell disorders as a possibility when I felt fabulous after a shot of steroids. I felt almost normal again. With mast cell disorders, you are right, a person may or may not have skin involvement depending on what the mast cells are doing. Also, according to this website, negative tryptase results do not rule out a mast cell disorder. Here it lists the tests that are done to help diagnose: http://www.mastocytosis.ca/diagnosis.htm BTW, beta blockers are another class of drug that can cause problems for people with mast cell disease. More information (lots!) can be found here: http://stoppotsvirginia.blogspot.com/2012/07/find-your-pots-cause-wide-world-of-mast.html#.UxY1Vaplnx8 I hope you can find out what is wrong and get some treatment! Hollin

Checking for mast cell disease is tricky and sometimes people have all of the signs, but test normal on everything. I am about to investigate testing for myself because I have many of the signs and feel better on antihistamines. H1 and H2 meds are medications that block the action of histamine on H1 and H2 receptors. According to Wikipedia, "Histamine, acting on H1-receptors, produces itching, vasodilation, hypotension, flushing, headache, tachycardia, bronchoconstriction, increase in vascular permeability, potentiation of pain, and more." H2 receptors of histamine are found in the digestive tract. You are probably already familiar with some H1 and H2 antihistamines because many are over the counter. I am on Zyrtec (H1) and Zantac (H2), which is a common first-line treatment for mast cell activation syndrome. Children's Benadryl can be used for flares (Children's because liquid is faster acting). This website from Canada has useful information about symptoms and diagnosis, as well as triggers and treatment. http://www.mastocytosis.ca/signs.htm Best wishes!

Hello Gemma. This may just be coincidence, but people with mast cell activation syndrome are supposed to avoid NSAIDs because they can cause flares. If your dysautonomia is due to MCAS, that might be what is happening.

Hi Alison, I have it, as well as at least 12 other people here; there was a poll recently, though only 95 people took it. http://forums.dinet.org/index.php?/topic/24847-what-caused-your-potsautonomic-issues-poll/ Conversely, this small study found that 78% of people with Joint Hypermobility Syndrome also have dysautonomia. http://www.sciencedirect.com/science/article/pii/S0002934303002353 There is also a forum for Ehlers Danlos/ Joint Hypermobility at Inspire if you are interested. I was also wondering about the differences in POTS or dysautonomia associated with JHS versus other causes. This short and interesting article mentions a few. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847865/ Best, Hollin

I have been having cravings for vitamin c tablets. I just want to eat them like candy, even the ones that are not flavored. Perhaps I need to get my levels checked.... Thanks for the article!

I will be looking into the possibility of a gluten allergy, because so many of the symptoms are familiar. I have migraine, eczema, chronic constipation, and ataxia in addition to dysautonomia and these were all mentioned in the article. Thanks so much Tuesday!

Hi JuneFlower, sorry you are going through this. I had a Neurologist tell me the same thing. I hope you find a good replacement.

I think I am seeing some improvement with taking a Zyrtec/Zantac combination recommended for mast cell activation. If you have low level allergies, they may make you feel tired and give you brain fog. Something to think about... @ Tuesday, what made you decide to eliminate gluten? Did you have any symptoms that cued you in on an intolerance issue?

Hello JuneFlower, If she is refusing to try to go to school, she may be feeling fear or distress at the thought of not being able to perform or having an episode at school. There are family counsellors who specialize in helping people deal emotionally with chronic illness. I know that helped me when I was in school and feeling overwhelmed. Best, Hollin

I wish that were true... If it were I would be cured by now, LOL. When I was at my sickest, I had a lot of trouble with acid indigestion, loss of appetite, and heart rate spikes in response to food. I lost so much weight that my knees were the largest part (in circumference) of my legs. I am much more stable now, but I still struggle with dysautonomia daily. Medications and a better appetite have caused me to gain weight and I now have a normal BMI. It could also be that the weight she gained was water weight, thus increasing her blood volume and improving her POTS symptoms.

I'm actually a really intelligent person, judging by my past school record, but you might not guess it because I have been so out of it lately. Reading a paragraph can be a real challenge sometimes. I have very little mental energy and seem to be halfway towards stupor. I want to address the underlying causes, but so far nothing has really helped. Has any of you tried adding ADHD meds and did it help you?

Yes, if someone knows the answer to this, please let us know. The only things that I know give me energy (drinks with caffeine) give me migraines. I am currently trying a Zantac/Zyrtec combination in case I have a mast cell issue, but its too soon to tell.